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Medical Forum / Diseases and Disorders / Epilepsy / September 2003

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Bad Medicine

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J.L. - 17 Sep 2003 00:26 GMT
Hi,

After finding out about the dangerous of Fenobarbital i had to post
something to this newsgroup.

What i found out is Fenobarbital is bound to cause trouble even in later
life. Toxicomania (drugs/alcohol) is one of the side-effects though i
don't understand what's that supposed to mean i now start to understand
better some of the stranger things i've done with my life.

In the end i took prescription drugs for over a decade and suffered from
the side-effects for half or even two-thirds of a decade. Light headed,
dumb, sleepy, irritated, lossy memory, hair fell out (16yrs.old but it's
back), and so on. I got that tired of it i took my chances and stopped the
medication on my own after a solid and fair agreement between me and
my parents about taking or not-taking pills.

Do any other people have similar experiences. Side-effects wich are worse
then the illness. Doctor's who treat side-effects as if they were symptoms
etc.

Kind Regards,

J.L.
jedi and son - 17 Sep 2003 17:19 GMT
> Hi,
>
[quoted text clipped - 20 lines]
>
> J.L.

All medicine have side-affects (your milage may vary).  Honestly, not
everyone experiences the same ones.  I can certainly appreciate your
frustration with Phenobarbital, however, not everyone will experience the
problems you went through.  My son had Lamictal added to his Topomax in
June.  One of the "potential" side-affects of Lamictal is a life-threatening
rash.  With an experienced Pediatric Epileptologist there are, sometimes,
things that can be done to reduce the likelihood of some side-affects
occurring.

There are some things that can be done to help you.
1) Do you best to find the Best Specialist for you
2) Be sure that your various Doctors and Specialists actually talk and have
good working relationships....them knowing that your seeing the others can
help
3) Take Notes...whether from the meds or from Seizure activity...memory is
likely to take a hit.,,,just pray you recognize your own handwriting (J/K)
4) Be vigilant about your care.  In the case of my son, who has Epilepsy, I
am the protector.

To be fair, there are people who are active on this list who use Phenobarb
with success.  I'm guessing that there are quite a few details that were
left out of your post.  It was not clear to me whether you were labeling
Toxicomania as being related, generically, to drugs and alcohol or if you
were mixing.  Also, it was not clear whether the "Bad Medicine" you referred
to was the Phenobarbital itself or the care given by your practitioners.

I am hopeful that things are better for you.  I, for one, am grateful for
the relief my son has received via the meds and I am ever hopeful that the
last vestiges of the symptoms will be brought under control.  We continue to
make progress and his cognitive levels continue to climb.

Best wishes and God Bless

Jedi and Son
Chive mynd - 20 Sep 2003 15:20 GMT
The doctors are aware of the potential of all these medications to have adverse
side effects.  A patient has to be responsible and be able to describe any
changes since a med is started.  First, is it controlling the seizures, either
less severe or less frequent, and then the side-effects--are they worse than
the original problem.  It's not about magic pills that eliminate the problem,
but a continuing process of therapy
 
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